Billie Bainbridge

Billie was born on 25 April 2007. She lives in Exeter with her parents Sam and Terri and two year old brother Joe. This little family has been hit twice by cancer in one year. In February 2011 mum Terri was diagnosed with breast cancer. She had a mastectomy and a large tumour was removed. She then had further surgery to remove lymph nodes. This was followed by several months of chemotherapy and then five weeks of daily radiotherapy.

While Terri was undergoing chemotherapy, Billie began to show signs that all was not well. At first we all thought it was just a reaction to her mum’s serious illness. Then at the beginning of June she started getting wobbly, her eyes started drooping and she had difficulty swallowing.

Sam and Terri’s GP told them to take her straight to hospital, not waiting for a referral. The same week she had a MRI brain scan and was diagnosed with Diffuse Intrinsic Pontine Glioma, an inoperable tumour in the brain stem. This is the worst type of brain cancer. It is too dangerous to operate because so many of the brain’s vital functions are located in the brain stem.

Only about 40 children in the UK are diagnosed with this form of brain tumour each year. The survival rates are extremely poor with many children not surviving more than eighteen months. Radiotherapy can be used in an attempt to shrink the tumour and reduce symptoms, but frequently the tumour starts growing again within six to nine months, this time more aggressively.

Following the brain scan and diagnosis there was a desperate search to find a hospital which could start treatment immediately. After a few days Billie was admitted to University College London Hospital where she completed a six week course of radiotherapy in early August. While this was going on Terri had to come back to Exeter for her chemotherapy treatment!

Billie responded well to radiotherapy and was well enough to start school at the beginning of September. This was wonderful as there were many days when we thought this would not be possible. However we know that radiotherapy gives temporary respite only.

There is no conventional cure for Billie’s form of brain tumour and she has already had the only treatment available in the UK. So the search was on to find treatment anywhere in the world which might improve her chances of surviving this terrible disease.

Family and friends have been devastated. It seems unbelievable that one little family could be hit by such serious cancer twice in a matter of months. When the search for alternative treatment began, Sam and Terri’s friends started a fundraising campaign, called the Billie Butterfly Fund. It was given this name because her symbol at nursery was a butterfly and she loves them. A Trust was established in Billie’s name with the stipulation that any money not needed for her treatment will be used to support research into this devastating type of brain cancer.

Billie has now been accepted for pioneering Antineoplaston Therapy at the Burzynski Clinic in Texas which has been conducting FDA (US Government) clinical trials. The family travelled to Houston on 17 September and Billie had her initial consultation at the clinic on 19 September.

Antineoplaston therapy specifically targets cancer cells without harming healthy cells. Each patient has a personalised treatment plan determined by medical history and extensive analysis. Typically treatment lasts for 8-12 months. Initially Billie will have to stay in Houston for 4 weeks before continuing her treatment at home. She will probably have to return to Texas periodically for evaluation.

Although there is no cure for Billie’s type of brain tumour, the treatment in America has improved survival rates in similar cases to Billie’s. It is conducted under the control of the responsible US Government agency. Most importantly it offers the real prospect of improving Billie’s chances of beating this dreadful disease.

The costs of Billie’s treatment in America are likely to be at least £200,000 and could be more. This is the target for the Billie Butterfly Fund and there has been an amazing response to the campaign, but there is still a long way to go.

We do hope you will be able to help raise the money for Billie’s treatment so that she has a chance to grow up like any other little girl.

For further information about Billie's Story or to show your support please visit http://www.billiebutterflyfund.org/